Tuesday, December 23, 2008

The Whiff of Hope

A Whiff of Hope. Pictures a side view woman's face with eyes closed."The popular belief is that protests arise when large numbers of individuals are fed up with the injustices of their lives. Actually, that rarely occurs. Rather, people rise up when they sense a whiff of hope," writes Frank Bowe in a Ragged Edge article. [emphasis added]

Wow, I could not have said it better. What a great phrase!

The sad thing is that there are people with disabilities, workers in the disability field, bureaucrats, who are saying just the opposite. They say the reason we don't have more of an active movement is because times have changed. It's not the same as it was 20-30 years ago. We really had needs to address then. The rank and file is content with what we have. These leaders act like all that is left for us to do is a little tweaking. I could not disagree more.

Those statements come from those who do not understand why oppressed people organize or sacrifice their time and resources to any particular issues. Those statements are not from people who hope, from advocates, or organizers; they are from desk-jockeys, office-holders, or pencil-pushers.

What does the
whiff of hope smell like?

It smells like people can have some control over their lives. It smells like people can get their brothers and sisters with disabilities out of abusive institutions. It smells like we can get people to register to vote, or have control over our lives, or need our sidewalks fixed. It smells like the hope of a better life. So for those of you out there who peddle hopelessness in the form of, "we have what we need", or "there's no reason for people to organize around issues anymore," or, "people with disabilities are satisfied or lazy", here is a short list of things we can hope to end on our watch. We are the standard bearers for our generation; if not us, who? We can do it. Let's go get 'em!

A To-Do List

  • Job discrimination is common in years following ADA passage: the ADA was no silver bullet against job discrimination, say disability researchers Jae Kennedy and Marjorie Olney.
  • Federal law (the Fair Standards Act of 1038, among others) permits people with disabilities to be excluded from worker protection laws such as minimum wage and safety regulations.
  • Companies firing disabled workers in record numbers. A survey by Mercer Human Resource Consulting found that 27 percent of companies dismiss workers as soon as they go on long-term disability.
  • A pernicious 42 percent employment gap separates working-age people with and without disabilities.
  • Far too few people with disabilities are registered to vote. A survey of 196 private non-profit disability agencies has found that over half (54%) are "not attempting to meet the requirements of the National Voter Registration Act," which calls for agencies to register individuals to vote. The study was funded by the National Institute on Disability and Rehabilitation Research, as part of a three-year grant called "The Empowerment Project".
  • Medicare's Homebound Rule - The Medicare home health homebound rule is being used to imprison thousands of people with permanent disabilities and serious health conditions in their home each day.
  • Is anyone watching to ensure accessibility codes are enforced? I have a friend who worked for the zoning commission in my town. He said, if no one is watching, lots of accessibility errors and omissions get passed through.
    • Work with general contractors/construction unions to educate them on codes
    • Work with city zoning offices to ensure zoning laws are enforced
    • Work for visitability laws in communities
  • Guide and/or service dog access is still abysmal. Created educational packet to distribute to every business, hospital, medical clinic, office and transportation systems.
  • Language - Words used to describe people with disabilities are used that demean, devalue and discriminate. The use of the word "retarded" could be an entire campaign on its own.
  • If we had national single-payer healthcare, there would be no "pre-existing conditions", that for-profit health care agencies could use to deny services because people are not worthy of digging into their profits. Doctors and patients could make decisions about treatment plans.
  • Well-meaning parents of growing or adult children do not often make decisions based on the best interest of their child. They can be overprotective and make decisions based on what is best or most comfortable for themselves.
  • Personal assistants need healthcare. Thousands of workers who provide vital services to people with disabilities leave for other jobs that offer health care benefits. Many people who provide personal assistant services are themselves people with disabilities.
  • City and State park systems lack accessible rooms, trails and interpretive centers. Social isolation is devastating to any human being.
  • A young boy with a disability sliding down a circular slide. from:http://www.noahsworldusa.com/Children with disabilities still, after more than thirty years of IDEA do not receive "free appropriate public education". Parents are intimidated by schools and children lack for the most basic of special education and related services.
  • Mental health parity in health care plans does not exist and should.
  • The "Money Follows the Person Act: not law yet.
  • State and county courthouses remain inaccessible to people with disabilities. The U.S. Supreme Court ruled on May 17, 2004 that states are not immune from requirements to make their courthouses accessible under the 1990 Americans with Disabilities Act More.
  • Independent living for a million adults doesn't exist because of just a few hours of help. More than 3 million people in the U.S. need about 16 hours of support a week to live independently. Without it they face going hungry, falling or are forced to endure problems that increase the risk of institutionalization and death, according to a new study by researchers at the Disability Statistics Center at the University of California at San Francisco.
  • Nursing home data can help with providing community alternatives, says disability rights attorney Steve Gold. There are at least 267,691 disabled people living in nursing homes who want to move out.
  • Social Security Determination offices have problems nationally. The state-operated offices determine whether applicants are eligible for disability benefits. The General Accounting Office report issues last month said the offices have significant problems.
  • Abuse of seniors under-reported, says study from the University of Iowa; because state laws vary, reporting of instances of "elder abuse" vary widely.
  • What are the ethical, legal and social implications of the Human Genome Research Institute? The University of Kansas recently received $915,000 to study the issue. Surely we have a few things to say about that!
  • What are we doing here? Asian nations to develop universal design standards Japan, China and South Korea are planning to develop a set of universal design standards for all three nations, with the aim of eventually having the standards adopted worldwide. What is our country doing?
  • Government websites still have access problems, says report. Less than a fourth meet federal requirements for access under Section 508 of the Rehabilitation Act.
  • Web access still remains a national disgrace. Ten national disability rights groups have filed a friend-of-the-court brief to ensure that the World Wide Web is accessible to persons with disabilities. The Americans with Disabilities Act covers Web, says NCD. Yes, says the National Council on Disability in a paper released last week. Implementation is marginal. And that's just the virtual world. The natural world continues be inaccessible.
  • "Students with disabilities, who now are estimated to represent nearly 10 percent of all college students, currently experience outcomes far inferior to those of their non-disabled peers," says the National Council on Disability.
  • Disaster mitigation and people with disabilities - When floods, tornados or other natural disasters occur, take a guess at who is last in line?
  • Olmstead implementation - more needs to be done to get people out of nursing homes and into their own homes. More money, more staff for CILs, more time to free individuals, more indignation about people being imprisoned for the crime of having a disability.
  • More often than not, disability issues are seen as charity issues, not civil or human rights issues.
  • Medicaid waivers need oversight. The federal Centers for Medicare & Medicaid Services does not adequately monitor Medicaid state waiver programs which provide in-home services to 700,000 people nationwide, the GAO said in a report issued recently. A leading disability activist calls the report "paternalism.
  • Class and disability issues are fused together, yet rarely seen as related.
  • 'Inclusive Home Design' bill enters Congress. Rep. Jan Schakowsky (D.-Ill.) has introduced H.R. 2353 to require all single family homes receiving federal funds be built with a no-step entrance, "32" clearance doorways on the main level, and one wheelchair accessible bathroom.
  • A new report reveals the obvious. Older Americans want independence, control, says report Older people -- the nation's fastest-growing demographic segment -- want to remain independent and in their own homes, and services are woefully out of step with this priority.
  • Most people with disabilities do not have "disability pride" and do not see themselves as worth of equal treatment. Likewise, only a small few understand and can revel in the glory of disability culture.
  • Read the fine print in the Hippocratic oath and you will find that "do no harm" does not apply to people with disabilities.
    • Physician assisted suicide is a national disgrace.
    • People with disabilities who are depressed are more likely to be assisted to death than referred to counseling.
    • In 1989, the U.S. Civil Rights Commission issued a 153-page report entitled "Medical Discrimination against Children with Disabilities." Among the events considered by the Commission was an experiment conducted from 1977 to 1982 at the Children's Hospital of Oklahoma. Doctors there developed a "quality of life" formula for babies with spina bifida, taking into account the socioeconomic status of the baby's family to determine what to advise families about a simple but life-and-death procedure. Better-off families were provided a realistic and optimistic picture of their child's potential. Poor families were provided a pessimistic picture. All of the families who were given an optimistic picture asked for medical care for their children. Conversely, four out of five poor families agreed not to treat their children, and twenty-four babies died.
    • Passive denial of appropriate care is more likely to happen to someone with a disability than someone without one.
  • Disabled people are the least likely to use Internet, says study Almost three quarters of Americans who report having a disability also do not use the Internet, says a new study from The Pew Internet & American Life Project.
  • Reading newsprint hard for many - Of the one in 5 working-age adults who reports having a disability, 16 percent have trouble seeing the words in newsprint, says the Centers for Disease Control.
  • A new study reveals that people with disabilities lose nearly all their employment cases. Over 9 out of 10 times, employers prevail in disability discrimination lawsuits against them, says the current issue of the American Bar Association's Mental & Physical Disability Law Reporter.
  • Employers know little about tax credits, says human resource society Human resource professionals in the nation's top companies know little about the tax incentives available to businesses for hiring persons with disabilities. They also fear lawsuits over lack of compliance.
  • Tax credits have had limited effect on employment of people with disabilities. Existing tax incentives designed to encourage businesses to employ and accommodate workers with disabilities have had limited effect, says a GAO study.
  • Survey: employers reluctant to hire workers with disabilities - Only one in four companies in the U.S. employs workers who are known to have disabilities, says a new report.
  • People with developmental disabilities have a 4 to 10 times higher risk of becoming crime victims than people without a disability.
  • Sixty-eight percent to 83 percent of women with developmental disabilities are sexually assaulted in their lifetime; that is 50 percent higher than the rest of the population. More than half never seek legal or treatment.
  • Eighty-one percent of people with mental illness are physically or sexually assaulted.
  • More than 85 percent of women with disabilities are victims of domestic abuse, in comparison with, on average, 25 to 50 percent of the general population.
  • Women with Disabilities at Greater Risk for Partner Abuse
  • Based on emergency shelter data for Illinois, more than half of the individuals using shelters are identified as having a physical or psychiatric disability (about 24,000 people in 2003).
  • Proportionally more persons with disabilities rent (32%) and are rent-burdened (60%) when compared to non-disabled (25% and 46% respectively).
  • There is an SSI Marriage Penalty - If you marry someone who is also on SSI you lose money. In addition to the monetary penalty recipients who marry, those must also endure: Not being able to openly celebrate their love and commitment to one another in the company of friends and family.
    • Not being able to inherit one another's estates as a spouse.
    • Not being able to get information when their partner is in the hospital
    • Not being able to make end of life decisions for their partner when necessary
    • Not being able to make funeral arrangements for their partner
    • Not being able to live openly as husband and wife
  • Depictions of people with disabilities on television and in the movies (Tropic Thunder, for example) portray us a stupid, oafish and incapable of holding positions of power. The most recent example with Saturday Night Live's depiction of Governor David Patterson of New York; his response best sums it up: There is only one way that people [with disabilities] could have an unemployment rate that’s six times the national average — it’s attitude. And I’m afraid that the kind of third-grade depiction of individuals and the way they look and the way they move add to that negative environment.”
It's a partial list. I didn't even touch the issues of sexual identity and disability, or race and disability, or artists with disabilities, or promoting disability culture or many other disability related issues. If I had more time, I'm sure I could triple (quadruple?) the length of the list and still not be finished listing the issues that face us and our fight for equality in our government and society.

Fight Complacency with Hope

Complacency is not a factor in most people with disabilities lives; it is our leaders who are complacent, who do not offer us a whiff of hope. Do you get it? Do you? For you who do believe in a whiff of hope, Obama's presidential campaign taught us is that hope is contagious and a great organizing tool. So, for 2009, let's start spreading that whiff of hope (God, how I love that phrase) and bringing people together to change our futures.

Cross-posted at EndeavorFreedom.TV

I have been absent from the blogosphere lately. I've been working with a local grassroots action team to spread hope and fight for our rights. It's been great fun and we've seen a lot of success. However, I have missed blogging. My new year's revolution is to write whiffs of hope for all the 31 days of January to get me back in the habit. Wish me luck.

Happy Holidays Everyone...


shiva said...

I agree with nearly all of this (although obviously there are significant differences between the US and UK situations, with the UK's supposedly universal healthcare probably being the biggest... tho, the way disabled people are treated within that national health system is another story...), with the one small exception of "mental health parity". I don't have the links to hand right now, but have read convincing arguments that "mental health parity" would actually be very bad for psychiatrically-labelled people in terms of liberty and human rights, as it would make nonconsensual treatment and institutionalisation much easier.

Re the marriage thing: isn't it possible to have at least the first and last of those things by having a marriage ceremony of your choice that simply isn't State-sanctioned? I certainly am not at all interested in getting a piece of paper to give State "approval" to any of my relationships. Also, i think the other things in that list ought to be things that people should have the right to pick and choose whoever they want for, and not have to give them all to one person.

Good luck with blogging every day in January. I've thought about doing something similar myself, but i know that every day isn't possible... i really do need to get through my enormous backlog of Things To Blog About, tho...

word verification: biallogy - biology for allies?

Chris Birge said...

I agree with most of what you've said here, but one thing I don't understand is the opposition to physician-assisted suicide that seems to exist in the disability rights movement. Are there actually cases where people who did not previously express a desire to end their lives have been encouraged to do so? If that is true, I have not heard about it. My dad is a doctor. People in my life always say they love me and want me around. Right now, I want to stay around. However, I am fully aware of the fact that, even if they don't say it, I am a burden on many people that I care about I have been in counseling for most of my life. If I were to make that sort of decision it would be based much more on logic than on emotion. I know that my dad has conflicted emotions, because he has taken an oath that basically says he cannot help me if I ever decide I want to do this. Yet, if I did, it would be largely to help him have a better quality of life. Don't misunderstand me, I am not in favor of physician-assisted suicide for those who have not had significant counseling, psychiatric treatment, or those who do not have well thought out rationales for their choice, nor do I want anyone to be pressured into a decision, but don't we have a right not to be a burden, if we chose to (or, depending on the disability, it may be a right not to be in pain, for some people). Take the story of Joanne as an example, I would not have known her name. I only knew her face. However, she was obviously a fighter. I like to think I'm strong, but she sounds like she was much stronger than me. If someone like that ended up in a nursing home, I cannot help but think about what the chances are of me being able to continue to live independently, and I'm not sure I would want to continue to survive if I couldn't do that. I couldn't call that living.

Having said this, I couldn't agree more with you regarding the lack of Internet access. I see the "digital divide" as a major problem for the disabled. What bothers me more is the number of us that don't seem to care about not having Internet access. Perhaps those people don't realize how important computer access will be in the future.